BiographyGiordana was born seemingly healthy, until she was 5 weeks old when she had not gained any weight, she did not respond to any visual stimulation and had a dent in the top of her head. She had an urgent appointment with ophthalmology where we were told Giordana was blind. No one listened to our concerns regarding Giordana’s weight at this time. We took Giordana down to Great Ormond Street Children’s Hospital for electrodiagnostic testing where it was found she was not blind but we did not know why she could not see.
When Giordana was 4 months old she got rushed to hospital where she had an NG tube placed. She had a videofluoroscopy and it found an unsafe swallow. She then had blood tests due to her symptoms and it was found she has suspected mitochondrial disease, currently under investigation.
In March she had a surgical feeding tube placed and she also had a half airway repair as they found two airway disorders when doing her surgery. She has a wheelchair, specialist seating and specialist bed due to her airway disorder, reflux, global development delay and hypotonia.
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